Hi There....I was not a candidate for Vistide...My CMV is very high....but so is my HHV-6A and EBV and Micoplasma. So for now, they are trying the Valcyte and an antibiotic. They hope the Valcyte will snag the CMV as well as the HHV-6A. My vision was declining fast prior to Valcyte treatment, but is now holding steady after 9 months of treatment. I believe Vistide might be "arsenal" later on....but then I will have to give up my Enbrel and Methotrexate which I am on for advanced arthritis. Really GOOD to hear of your progress Ross! I am NOT afraid of these drugs....I would rather keep my eyesight and have mobility and energy....I want to be back on the racetrack in 2011!....GodSpeed......Julia....http://vlgonvalcyte.wordpress.com/

Um, if memory serves my VO2 max was 15 before starting Vistide. (This is one reason why GET is a joke: I was for all intents and purposes an amoeba--I could barely burn oxygen.) And I hadn't been sick very long and tried to work as long as I could before going on medical leave from my job; i.e., deconditioning was not a significant factor. Also, I finished the test, so we got a good result.

We did not do a two-day test like the Pacific lab. That would've been fascinating.

I see Dr. P again very soon and will volunteer to do the test. I'll report if I do it.

Um, if memory serves my VO2 max was 15 before starting Vistide. (This is one reason why GET is a joke: I was for all intents and purposes an amoeba--I could barely burn oxygen.) And I hadn't been sick very long and tried to work as long as I could before going on medical leave from my job; i.e., deconditioning was not a significant factor. Also, I finished the test, so we got a good result.

We did not do a two-day test like the Pacific lab. That would've been fascinating.

I see Dr. P again very soon and will volunteer to do the test. I'll report if I do it.

Click to expand...

Thanks, hvs. 15? Are you sure you were alive at that point? I think Mary Schweitzer said hers was 17 after she had been off Ampligen for a while.

Thanks, hvs. 15? Are you sure you were alive at that point? I think Mary Schweitzer said hers was 17 after she had been off Ampligen for a while.

Click to expand...

Hey, Advocate. I did indeed have another treadmill test earlier this week. And I had them check my past scores.
I was at 17 (ml/kg/min) in the summer (before going on Vistide).
27.7 in November (after three months of Vistide).
and
30.7 this week.
Hooray! Awesome.
Now, I'm not at my predicted for my weight and age, yet. But these improvements are ridiculous.

It is my understanding that it is. It is the sort of thing that they would perform on a heart patient, because a bad heart would give you the same bad result. (After the first dramatically-low result I had a heart MRI and my ticker was pronounced in lovely working order.)
They literally measure the volume oxygen going and out of your mouth. It's a very fancy test with gas sensors and computers and a tester very intensively measuring all kinds of things. It's expensive. You'll need good insurance to get one of these.
But it's also absolutely devastating to the Wessely types--you cannot trick the computer or tester. And your brain can't lower your VO2 max, so somatization crap is thrown out the window.
If doctors in the US and UK could all just order one of these puppies for suspected CFS patients a lot of psychiatrists would be out of jobs.

They literally measure the volume oxygen going and out of your mouth. It's a very fancy test with gas sensors and computers and a tester very intensively measuring all kinds of things...But it's also absolutely devastating to the Wessely types--you cannot trick the computer or tester. And your brain can't lower your VO2 max, so somatization crap is thrown out the window.

If doctors in the US and UK could all just order one of these puppies for suspected CFS patients a lot of psychiatrists would be out of jobs.

Click to expand...

HVS, I love it. I'm so glad you are feeling better and that your VO2 max has improved so much. Y'know, Cort has asked for success stories for the home page of this website. I hope you will submit at least a couple of paragraphs, because this is one of the best success stories I've heard.

HVS, I love it. I'm so glad you are feeling better and that your VO2 max has improved so much. Y'know, Cort has asked for success stories for the home page of this website. I hope you will submit at least a couple of paragraphs, because this is one of the best success stories I've heard.

I hope you don't mind my asking--have you been tested for XMRV?

Click to expand...

I told Cort that I'd be happy to communicate with him about it or try to compose something.
I tested negative, though it was in November after I was already massively improved, so that can't signify much one way or another. An antibody test would be more telling.

This is weird. I'm replying to Ross's post (I subscribe to this string) before it appears on the website. He wrote:

Same for me hvs...all cardiac tests normal, yet a VO2 max showing the equivalent of heart failure. Not only did my VO2 Max and Immune panel improve after Vistide Tx, but I also had hormone improvements. These results show CNS viral infection to be the cause of much of my symptoms.

Click to expand...

I am really, really fascinated by these VO2 Max reports. Do you know if other doctors do this test? Was it done on a bicycle or just sitting or lying down? Were you well enough to do it? Was it done just once? Or before and after some activity?

Equivalent of heart failure! Why is every doctor not doing this test? Did they give you a reference range for normal?

Ya, it should be a pretty much open and shut case as a biomarker since you can pretty easily rule out other explanations for the shockingly low numbers. Your choices are heart failure, toxin poisoning, problems on the cellular level [viral infection included], or lung problems. You rule out long problems on the spot. Your heart needs to get looked at. And then you do the many (and, yes, expensive) blood tests to check out the others.
It's an expensive test, and presumably the second test showing the Pacific Lab results would be twice as expensive.
And you can't cheat it, so the Wessley sh!te is blown out of the water. The operator watches your heart rate increase on the graph and knows when it plateaus at its peak.
You know, if people out there have the right kind of doctor who, though he or she knows nothing, is willing to investigate, they could ask for this. The results should shock the GP and subsequent specialists into action. The problem is, there is little to no literature on the efficacy of antivirals, so your average doc in the middle of a big hospital system with an HMO mindset is not going to try (and have to justify to management).

Ya, it should be a pretty much open and shut case as a biomarker since you can pretty easily rule out other explanations for the shockingly low numbers. Your choices are heart failure, toxin poisoning, problems on the cellular level [viral infection included], or lung problems. You rule out long problems on the spot. Your heart needs to get looked at. And then you do the many (and, yes, expensive) blood tests to check out the others.
It's an expensive test, and presumably the second test showing the Pacific Lab results would be twice as expensive.
And you can't cheat it, so the Wessley sh!te is blown out of the water. The operator watches your heart rate increase on the graph and knows when it plateaus at its peak..

Click to expand...

LOL, I think Wessely et al have already dismissed it. This UK study claims that V02 scores in CFS are no different than healthy controls, and that "contrary to the belief of many patients, maximal exercise testing to the point of subjective exhaustion proved to be harmless, with no subjects suffering any lasting deterioration in their condition after assessment." Ugh. An old American study also finds no differences, but points out that CFS patients have a low fitness level, adding, "Our CFS group could withstand a maximal treadmill exercise test without a major exacerbation in either fatigue or other symptoms of their illness."

The strange thing is that an earlier UK survey intended to assess fatigue referenced V02 as a way to categorize patients.

A tiny French study showed a similar result: "the slope of VO2 versus work load relationship did not differ from control subjects", however"there was a tendency for an accentuated PvO2 fall at the same exercise intensity, indicating an increased oxygen uptake by the exercising muscles". They found that other abnormalities though (thiobarbituric acid-reactive substances and asorbic acid, both markers of oxidative stress, and m-wave duration) and pronounced them biomarkers.

Only good old Staci Stevens found anything amiss, but she only included patients with RNaseL dysfunction.

I wonder if it relates to a subset of CFS patients. Some of those studies hint at cohorts gone wrong (if all of this sh&t is on pubmed, no wonder people think we're nuts!) but if Peterson is using VO2 as differential diagnosis for "classic CFIDS", he must be seeing it quite a bit.

LOL, I think Wessely et al have already dismissed it. This UK study claims that V02 scores in CFS are no different than healthy controls, and that "contrary to the belief of many patients, maximal exercise testing to the point of subjective exhaustion proved to be harmless, with no subjects suffering any lasting deterioration in their condition after assessment." Ugh.

Click to expand...

Right. We know they don't like to include actual CFS patients in their CFS studies!

Ross, I have to say that I'm so happy that Vistide has helped you so much. I wish it helped you more but I'm glad that you've gotten as far as you can. Thanks so much for sharing your experience with us!!!

I thought the VO2 Max test was highly capable of differentiating deconditioning from pathology?

Click to expand...

I have no idea but it doesn't seem to. From what I can tell it's largely used as a fitness test. From wiki:

V02 max is the maximum capacity of an individual's body to transport and utilize oxygen during incremental exercise, which reflects the physical fitness of the individual.

Click to expand...

So, the more fit you are the higher the score. A professional cycler, for example, may have a v02 of 70. A patient in heart failure might have 15.

The weird thing about the UK studies (well, what isn't weird about them really!) is that they don't support the somatic deconditioning/fatigue loop purported by Weasle. The V02 scores are the same as controls! Someone must have missed a memo. :tear:

Cancer patients become so deconditioned that they are similar to the frail elderly population in maximal aerobic capacity, or VO2 max (approximately 20 mL kg1 min 1). Patients with lung cancer or with severe fatigue accompanying their cancer have been noted to have extremely low levels of VO2 max.

The significantly reduced VO2 max leads to a high oxygen cost in performing activities of daily living, maintaining ambulation, and tackling vocational/avocational tasks. The oxygen cost surpasses that persons anaerobic threshold, which is the level of oxygen consumption at which lactic acid production by muscle exceeds consumption.

Cancer patients have a VO2 max of 16 to 25 mL/min and aerobic thresholds of about 7 to 9 mL/min. Activities of daily living and walking, in normal subjects, demand an oxygen consumption cost of about 6 to 16 mL/min. This means that daily functional demands can place cancer patients at or near their aerobic threshold, leading to fatigue, she explained.

Click to expand...

As hvs noted above, there are different reasons why v02 can be low -- viral infection, heart failure, lung issues like asthma. A normal, healthy adult, or even a sedentary adult should not have super low scores. To get that low you have to be extremely deconditioned. So when you see low v02 in someone young and otherwise healthy, it might be a good indicator, along with clinical presentation and other labwork, of CFS. AND, hvs's score improved after anti-viral treatment so it objectively supports a patient's report of improving.

But if I'm wrong, someone please correct me!

I believe (again, I'm speculating!!) that Staci Stevens is able to show a drop in v02 on the second day, illustrating PEM.

With the Pacific Fatigue Lab doing a new exercise testing regime, two exercise tests two days in a row and other tests (now known as the Stevens Protocol) theyve given the post-exertional problems ME/CFS patients have reported for so many years a chance to show up and they have.

Their results are both profound and disturbing. About half of the ME/CFS patients theyve tested do, in fact, fail or significantly under perform in the first single exercise test they cannot generate normal amounts of energy even when theyre rested. Its the rest of the patients that are so intriguing, though. When you give these patients a second test a day later many of them will fail as well--and fail spectacularly.

The amount of impairment the Lab sees can be astonishing - some patients suffer as much as a 50% drop in their ability to produce energy the next day. Ms. Stevens spoke of a twenty-something man whose next day exercise tests were worse that those of a normal 85 year old. In a hospital setting his cardiopulmonary exercise profile would suggest he had heart failure.

As hvs noted above, there are different reasons why v02 can be low -- viral infection, heart failure, lung issues like asthma. A normal, healthy adult, or even a sedentary adult should not have super low scores. To get that low you have to be extremely deconditioned. So when you see low v02 in someone young and otherwise healthy, it might be a good indicator, along with clinical presentation and other labwork, of CFS. AND, hvs's score improved after anti-viral treatment so it objectively supports a patient's report of improving.

Click to expand...

Exactly. You can't go from a 45 to a 17 in 18 months because of deconditioning. Not. Gonna. Happen.

I have been told by multiple people that decondidtioning can really only count for a 15% drop in v.02. So if your V.02 should be 45 for your age, you can only loose 6.75 points for being a couch potato. My v.02 is in the low 20s, thats 20 points lower than it should be. Something other than deconditioning is going on here.

That's strange about the VO2 Max test....if it cannot somewhat accurately diagnose the difference between deconditioning and pathology, what good is it? Maybe Dr Peterson had some additional testing going on that helped to quantify the difference because I thought he had mentioned having the ability to attribute fairly accurate percentages to each.

Click to expand...

Oh please, don't take my word for it. I just did a quickie layperson research!! I'm sure Dr. P has a good reason for including it and probably knows a lot more about it than I do! I was just curious. Please ask him!